Wednesday, 23 June 2010
At the 8 month point I am happy to report that all is going well. I've got over the recent bumps in the road (campylobacter, drop in lung function caused by mini-rejection possibly, cold) and in the last week have been feeling, well, energetic. I've joined the local gym, have been riding my bike, have table tennis coaching tomorrow, and yesterday set an all time record on my blows at home. I'm even going to try singing in a choir this weekend - I should manage to breathe for more than a couple of notes at a time now!
Had clinic this morning and the doc had nothing much to say. It's all good. They don't want to see me for another 2 months.
Well, what can I say? I am constantly amazed, surprised and taken aback by the way I can just breathe, get on with things and not have to think constantly about my lungs and how they are functioning. Slowly they are becoming just another part of me, doing their job as nature intended without conscious thought or effort, just like my heart, liver, or any other organ. I never really believed it could be quite this transformational - I expected a quality of life improvement but who would ever dare to dream it could just fix you so completely. No pain, little treatment, just living.
Long may it continue, and to the donor, whoever you were, if you are listening from somewhere, all the thanks in the world and then some. You've given me a fine old set of bellows. To the donor family....well, that is going to take some more thought, and it is about time I invested in that thought and put pen to paper.
Sunday, 13 June 2010
All I need is a terrier for the basket...
Later on, we did a bit of shopping in town and came back via the adrenalin-packed "Town and Country Fair" on Parker's Piece. While sipping half a pint of cider each and eating strawberries and cream in the sun, we read that Piper, a prolific and articulate blogger from New York, finally got her new lungs. She'd had something like 5 or 6 dry runs, including a 'damp run' where she got as far as being sedated before they decided the lungs weren't up to scratch. Something about the combination of Piper's great news, our morning cycle, the sunshine, and yes, perhaps the cider, brought me to the edge of tears, and I felt acutely aware of just how far we've come.
This time last year we were struggling to come to terms with the transplant idea at all. I've just been looking back at photos from last summer's holidays and remembering how much Will was struggling. He was determined, but just so compromised. Then we went through the unreality of being listed, the paradoxical hope that lungs would come soon but preferably not today or tomorrow, then the panic of the call and sheer other-worldliness of the surgery itself.
But then those first three weeks - the hardest days of all - and the first three months, which were only a little less hard. To start with, it was simply a question of getting through each day, trying to believe that when we went to bed we were one day closer to something better. I was scared most of the time and Will was in pain and not sleeping and on the edge of losing belief. Jim and Tori are about 3 weeks post-transplant now, and reading their posts reminds me of just how hard that time was. It really doesn't feel like there will ever be light at the end of the tunnel.
But there is light. To start with, there'd be tiny flashes every now and then. Then, around the 3 month mark, it was like someone switched on a light bulb. A pretty low wattage one to be fair, but light there suddenly was. That light grew slowly brighter over the next three months, but I was still scared. But yesterday, I realised that I am actually not that acutely scared anymore. It's taken nearly 8 months (and don't get me wrong, there will be more bumps and hard times, and I'm not blind to the challenges ahead), but... can I say this outloud?... not sure... I'll whisper it... I finally believe in these lungs.
It is a truly miraculous thing, organ donation. It really works! It gives life! Live Life Then Give Life! Yesterday, while I was gardening, I was listening to Will sing Schubert. We went to the gym together and he lifted weights and he ran and he rowed and he has muscles in his legs! After work today he played table tennis. There is so much out there to fit into the days. I wonder how Will's lungs feel about these activities - have they sung Lieder before? Are they missing clubbing or motorbiking or playing rugby? It's so poignant that the ultimate gift - the gift of life - is given with no conditions attached. The tragedy and generosity and wonder of that gift is incomprehensible.
This 100th post is sent out into the ether with gratitude, awe and an enormous virtual hug for those stuck in the transplant tunnel waiting for the signal to change.
Friday, 11 June 2010
I was worried and also interested to see what would happen. Last time I had a cold, and every time before that for the last few years, due to the horrors of CF the cold had inevitably led to a chest infection, loss of voice, IV antibiotics and often a 2 week stay in the CF Unit at Papworth.
For Weds, Thurs and today and the nights in between I sneezed and blew, but weirdly felt like it was what I can only describe as a 'healthy illness' - kind of manageable in a way that a CF encumbered cold never was. I guess it is what normal folk would call 'mild'. This is all new to me.
So I continued to work hard and got through 4 days in the office this week for the first time since the transplant. And then, at about 3pm today I suddenly felt a lot better. So that's that. It is very heartening and great news that I can pick up a standard cold and get better, even with all the immunosuppression. Hooray.
Tuesday, 8 June 2010
I got there pretty early so was 2nd on the Heart/Lung transplant clinic list. This means I got the usual X-ray, bloods and blows done quickly. The blows were good - better than ever in fact, although for some reason due to the technicality of peak flow and it dictating which numbers they record, the ones written down were the same as my previous best. The doctor was still a bit concerned about my Neoral levels, and will review today's bloods and let me know what, if anything, to change. If they are OK they will start tapering off the steroids at 5mg/week.
So I escaped the admission, with the proviso that they want to see me for bloods in a week, and back in clinic in two. All good though, really.
Busy day at work, now off to gym (!) courtesy of a friend who just joined and nominated me for a free week... I've had no staying power with gyms in the past, but hey, it's free so worth a go.
Thursday, 3 June 2010
I'd turned up to the transplant unit at 12:30 and after a short wait went into the treatment room and had a line put in my left arm, ready for the anti-sickness medication and sedation for the bronch and then for administration of any treatment needed. I then collected my notes and went over to Dutchess Ward with Vicky.
I sat on the bed, watched the end of Bargain Hunt and the start of the news, and a nurse came along with all the admission paperwork and a hospital gown, ready for the procedure. Then the doctor who I saw at clinic yesterday turned up and asked how I was doing - I reported that I was slightly better, my blows were up a little bit on Tuesday's numbers (but only a little bit - still a long way to go to get back to my best) and I was still running a bit of a temperature. He said he'd talked to Jas, whose opinion was that given the circumstances of the campylorbacter and the messing around with my immunosuppression that he would rather wait and see what happened in the next few days and see me in clinic again next week for a check up. The basic argument was that, yes, maybe it is a bit of mild rejection, but if it is bad then lung function will continue to deteriorate. As mine was stable, if not improving slightly, that was a good sign. Also, from a clinical perspective the treatment for the rejection would be increased steroids, and mine were already increased to 20mg. As of yesterday I have re-started the MMF and that will have an effect too, but will take 2-3 days to get the levels up in my blood and for things to stabilise. So, all in all he recommended I wait, and that it wasn't worth the risk of the procedure (which are small, but still exist - bleeding and even possibly pneumothorax/collapsed lung) since even if there was rejection it would likely be mild as I'm improving and there is no clouding on the X-Ray, and the treatment regime would be the same as I'm on already, if with a slightly higher steroid dose.
So he told the nurse to discharge me, which, since I hadn't yet been properly admitted just involved whipping the line out of my arm (removing a fair few hairs tearing off the just-applied sticky dressing) and waving goodbye.
I flippantly said in our conversation that "at least there is a bed free for someone else now", and the doc said that there was someone waiting...hastily adding that that wasn't the reason they'd decided not to FOB me...! So I reckon in truth it was a combination of the reasons above and a bit of medical triage - probably someone had come out of this morning's clinic with an urgent need for admission but they didn't have any beds.
On the plus side I get to enjoy a sunny weekend. On the downside I could get worse over the weekend, but I am hoping not and am feeling reasonably positive about getting better once I get the drug regime settled again. Onwards and upwards...
Wednesday, 2 June 2010
The good part is that once we'd got the diagnosis of campylobacter and started the appropriate antibiotics I started to feel better pretty quickly and now my gut is restored completely to normal. I also managed effortlessly to put back on the stone of weight I'd lost (about 6 kilos) during the week of eating basically nothing and losing everything very quickly out the back end. The weight gain phenomenon, getting back that whole stone in about a week, was helped along significantly by our old steroid friend, prednisilone. They whacked me up to 20mg a day while I am off the Micophenolate (MMF) to give me protection against rejection, and Vicky wrote in previous posts of the cravings and appetite it causes. It really is extraordinary - I can eat until my stomach physically hurts but I really won't feel full and will still look at food and quite fancy it. Somehow I crave the tastes, especially savoury, even when my body is saying 'no more!'. I am now so heavy I'm going to have to just accept I need to eat sensibly and be a bit hungry until I get the pred dose reduced again.
We had a very pleasant bank holiday weekend, with a lazy Saturday and then on Sunday went to meet my sister and her family, my mum and also some old family friends down in Southwold in Suffolk. It was blustery but basically bright, with the odd soaking rain shower. Fish and chips followed by a walk on the pier and round the town, and then back to Ellie's for vast (and I mean vast in my case) quantities of chilli. Vicky and I took mum home and stayed the night, and on Monday did some odd jobs for mum and took her for lunch by the sea. Mum is getting steadily worse with the Alzheimer's and spending 24 hours with her has the unfortunate effect of sucking any hope out of you and making you feel fairly desperate, not just about her condition and prospects but also about your own life. Misery is the overwhelming emotion for mum - it is intractable and insoluble. She knows it is all going wrong and she hates not being able to understand things and do things - making a cup of tea is a major effort and achievement for her now. I spent over an hour trying to explain to her how to turn on her alarm clock before she goes to sleep. It seems any logical construct, any instruction with more than one step is basically beyond her - so 'when you are in bed, you then press the button on top to turn the alarm on' is too much. On the one hand she realises she needs help, but then she massively resents any help given, especially from the professional carer who is now coming in every morning to check she's alright. Social services recommended twice a day, but we've started with once as we have to introduce these things slowly.
We left mum after lunch, with her in tears - the wrench of leaving, the guilt it engenders, is unbearable, but I have to protect my own life in its own precarious situation too. It has to be a balance of not feeling negligent to poor old mum, but trying to concentrate a bit selfishly on myself in this period of new life I've been given. It's tough, that's for sure.
We popped back to Ellie's on the way home and ended up staying for supper - far too much Chinese takeaway... Poor Ellie has been suffering awfully with the responsibility of mum too, and has been feeling very close to the edge. It really is for both of us to talk a lot and reassure each other we are not negligent and we are doing the right thing.
So to the bad. I awoke on Tuesday morning and felt a little off colour. I'd had a restless night and Vicky was saying my breathing didn't sound as relaxed when I was asleep. I took my temperature, which was raised again at 37.2 and then did my blows. I tried four times but just couldn't get the FEV1 or FVC up where they'd been last time I checked them on Sunday. It was just over a 10% drop, which is the magic number above which you are advised to call in to Papworth. Combined with the temperature I knew I had to call. So call I did, and they arranged to see me at clinic today. I went this morning and my blows weren't as bad as at home, but still about 10% lower than last clinic. I also had a bit of a sore throat. The doc couldn't see any changes to the X-ray, but they want to do a FOB (Fibre-optic bronchoscopy for those of you who haven't been paying attention...). I'm booked in to have the FOB tomorrow afternoon, subject to the availability of a bed. They will take some biopsies and analyse them for rejection, and will also grab some sputum out of the lungs and look for bacterial infection. If there is some acute rejection going on it will mean a course of IV prednisilone at high dose, which will send me fairly loopy (I don't think my appetite could possibly increase more, but maybe we'll see!). If is is a bug, then it'll be IV antibiotics. Obviously the best outcome will be neither, in which case it is probably a little viral infection and we just need to wait, but I need to know and it is best to be sure about the rejection.
One step forward, one step back. I am very much looking forward to getting back to some kind of stability, of the kind we were just starting to experience before I contracted the tummy bug. If nothing else I really need to get well enough to start exercising again or these Transplant Games in August will be a joke!
I'll update with the FOB results in a few days. Love to all.